Archive of ‘doctors’ category

The hands holding my heart.

It was a beautiful day here. The kind of day that makes the East Coast jealous 😉. Blue sky. A freshness in the air, a hint of spring at the corners of flower beds. Summer is a sweet far thing.

Looking forward while reflecting back.

As the sun sets, I’m sitting on Willows beach. I’m mildly freezing but it’s worth it to see the sky fade from brightest blue to faint pastels, a hint of pink and orange touching the edges of the clouds that cling close to the land. I’m grateful it’s such a beautiful day. It makes everything better.We spent the afternoon at the hospital. My dad sleeps almost all the time. He isn’t in pain. That’s exactly what he wanted. We asked he be taken off the medications they were giving him, to turn off his pacemaker, and let him be. No subject has ever been taboo, and I’m grateful to have been able to discuss birth, death and miracles in between with my family, and mum and I are deeply respectful of those  wishes.  I want him to be at peace, with just his breath and heartbeat, and feeling the love, us at his side until the end of this wild journey that we had the privilege of sharing.
I feel like there are tight hands around my heart. A tight fist of panic and grief. It feels as though I can scarcely breathe. I worry what it will mean when the hands release, with a final sigh of breathe. The sound and smell of the ocean calmed me. Steady waves gently rolling in to cover the bare beach. I can control them no more than my fathers breaths, but I can observe and cherish each. Footprints track through the rocky beach, but the birds seem few, and the last dogs and people turn in. A part of me wants to lean closer to the waves, to listen to what they whisper, for them to wash over me and wash away this feeling. But this feeling is a reflection of a life lived with love. It is a beautiful reminder of how deeply we as humans are able to feel.


I love the ocean.

I brought my dad a bouquet of flowers from the home garden. It’s a wild space, and beautiful for it. Lavender, Rosemary flowers, dandelions, heather, delicate weeds I have no name for. Dad loves to see my face light up when he gives me flowers, and it brought my heart solace to do the same for him, even if he sees them only in dreams, or catches a whif of Rosemary.

Thank you all so much for your beautiful words. It means the world to my mum and I. I’m so blessed to have been born to the parents I have, and feel such gratitude that they know my love, and see the joy they bring to my infinite moments. 💜

I love you, Dad.

Life begins with a promise. It is promised, when you are born, that one day you will die. You might spend 20 minutes on Earth, or revolve around the sun 60 years, or tomorrow, or 3 weeks from now. I guess in order to keep living, we pretend this isn’t true, like when you’re rereading a great book and try not to think about the ending you know is coming, so it won’t spoil the journey. There feels like there is always another tomorrow, and one after that, and the one after that…on and on unto the end of your imagination.

I became aware I was a mortal at a very young age. I was diagnosed with a genetic condition which predisposes me to tumors when I was 3 (that’s when I first remember it being explained to me). I became aware that tomorrow wasn’t promised. That there was only one promise the planet had yet to keep; that I would die. That we would all die. The first promise, my birth, had been fulfilled, and every moment was a gift. I lived every day after that with the intention of filling every second of existence with an infinite infinity of moments, memories, love.

It was easy. It was impossible. I failed. I succeed. I tried, though, and that’s the most important part. I try.

I tell my parents I love them, and hug and kiss them every night. I say goodnight, as though this might be the end of the Earth’s promise. That the tomorrow which is just dreams away might not be waiting for me. That tomorrow might move on without one of us. I’ve never told them that when I said “goodnight” and “je t’aime”, I was really whispering in my heart “goodbye”. I never wished to say a last goodbye.

So I am not wishing my father goodnight. Or goodbye. I am whispering to him with every breath we breathe together in our existence that I love him. And those are the words that have always meant everything and encompassed all.

I can’t even bring myself to type the word. That word. The word that is so final, so absolute, that once I type it, I won’t be able to see from the tears that roll down my chin. I’m not ready for a salt-stained keyboard. So I won’t. My father is taking a journey, a journey to a somewhere, a somewhere neither of us understands. He has stage 4 lymphoma. 2 weeks ago he was flummoxing me at Scrabble with his funny made-up words, eating dinner together, teasing me about how much onions I put in everything, walking, buying groceries, reading, snuggling with me. He was doing the ordinary things that make every moment extraordinary, and make up our infinity. He also went profoundly deaf, a side effect of the chemo. So we were also playing like the worst, most hysterical version of “Telephone” the planet has ever seen. So much was lost in translation, in deafness, but the love was not. Last week, we think he blacked out or his heart stopped, causing him to have a car crash (no one was hurt. not even him.). He went to ER, where he seemed alright, if a little confused and “odd”. But something as “off”. They admitted him, and he went downhill so quickly. He got a pacemaker, to combat the effects of the chemo, which were finally rearing their ugly head. After the surgery, he was very tired. A kind of tired which frightened me. Dad would wake up for a few minutes, maybe eat a little something, smile at me or say a little something, and then sleep again. Today he did that less. He is slowly walking away from me and I cannot catch up.

I’ve spent the past few days bawling at inopportune times, and wetting my dad’s pillow with tears (sorry-not-sorry). I need to make these moments even more infinitely infinite than they always have been. Because I need to store them in my heart.

I do not know how much time he has left with us. I never have. It is an unknowable thing, and we are blessed with this ignorance. Because the knowing would break us. It is breaking me. Cancer is terrifying because it makes you see the final promise looming ever-nearer.

He once told me he never imagined having children, but that he couldn’t imagine his life without me. <3

There is never enough time to be with the ones you love. A thousand lifetimes and the last “I love you’s” would still break my soul. I am so grateful for being a part of my Dad’s incredible journey on Earth.

And feel deep gratitude and love for all possible moments we’ve shared together, past, present and future <3.


Flying Higher

hand mudras for sleep

We are in Toronto, to see my Lyme doctor who is going to the ILADS conference, and the rest of my family, who live in this general area. I am so drained after the flight.

Toronto is HUGE, and I am feeling very small-town right now. I miss being able to look at the top of buildings without craning my neck all the way back.

The flight went well enough, although the altitude always makes me feel very sick. I have a killer sore throat and am having trouble swallowing. Nothing a little oregano oil won’t nab, but this is an all-time quickest infection rate. I missed choir practice last night as I was feeling so low and my throat was in so much pain.

The benefits of sitting in the bulk head on the lovely WestJet were felt as soon as Mum and I started doing yoga. Because the computer was with us, we could do a full asana practice, and it was like the lovely Michelle was with us too! Made the flight that much quicker and more peaceful.

Up to Batt!

My family doctor (who deals with my non-Lyme illnesses, if I ever get such a thing) suggested that because I have never had a psychological evaluation, and have been sick for so long with many neurological symptoms, that I should see a psychologist. He was very clear that he didn’t think I was crazy, just because I had Lyme disease, but anyone, especially a young person, who suffers a chronic illness probably suffers because there life has been changed so much. So bright and early this morning we went to see a psychologist downtown. The verdict: I’m officially not crazy. Yay! I suppose that just means I have a whole whack of serious neurological problems, which is not so much fun.

We went window shopping around the lower Johnson St. area, where a large portion of eco-friendly and locally owned businesses. It’s kind of uncomfortable doing yoga in lingerie with under-wire and lace (it’s fun to be girly!), so I was looking for an alternative to that. And just browsing.

After resting for awhile in the early afternoon, we headed on down to Knotty By Nature, the incredible fiber arts store in Victoria. I was looking to create a little hand-spun accessory for my lovely yoga teachers (can’t say what in case they read this!). The amazing and talented artists who own and work at KBN helped me pick about 5.5 oz of fibers that would blend well together: local wool, alpaca, and mohair, hemp, and bamboo fibers. KBN has drum carders people can use to blend the different fibers together into a batt, something easy to spin with. There are also wheel for customer use, and looms to rent or use there. It’s a pretty incredible place. This was my first art batt, and I’m really excited to start working with it. Dreamy softness, warmth, incredible caramel-y brown colors. Mum helped me turn the handle of the drum carder machine in order to blend the different textures together in order to have a more uniform yarn. I am exhausted from all this work and moving and thinking, so I am looking forward to just resting tonight.

“What Now?”

I seem to be one of those patients who doctors give the “What now?” face to a lot. I feel like a burden to their ordered lives, with so many complaints and problems that they take up much more than the few lines given to express the  “reason for coming in”. My prescriptions list flows into the margins.

I have been feeling extra specially awful for nearly a fortnight. I had about 6 of the uber cold shaking episodes, which are incredibly painful and exhausting. Shaking is our bodies natural way of warming ourselves up, and is impossible to fight, just like you can’t hold your breath and suffocate yourself. My Lyme-aware doctor thinks that it could be a reaction from a glucose intolerance, which apparently affects many women with Lyme disease. It is not cool. A few days ago I took a 2 hour glucose test, which involves drinking a deathly sweet drink of 75 grams of glucose (ooh yes. I don’t know if I have ever drunk that much sugar in one day ever). Then, you sit still for 2 hours and don’t eat or drink (minimally…can’t go two hour without a drink…so dehydrated always!) and then they draw another phial of blood. There was a lot of blood drawn that day…3 needles in all. I had to have a blood culture done, which included 4 culture bottles (whoa!) taken from both of my arms. I was not down with the idea at all but it was important. Apparently, I have some kind of gram-negative bacteria in my blood. The walk-in doctor I went to see was of the opinion that that was that, and the reason for my chills and tiredness, and that 2 weeks of double-strength Bactrim would magically cure my symptoms, or at the very least clear up the blood infection. The results were a bit confusing…the lab made a mistake on the preliminary report, but the wording is odd. It sounds as though they are not convinced what is ailing me.

I can’t find a family doctor…none will accept me, or my mother for that matter. It is like stepping into a fantasy land; It’s the McCarthy period and we are blacklisted for suspected Lyme-ist ties; Big Brother is watching out for me though, thank goodness. I don’t know how they can even legally turn me down. But instead, I have to wait over an hour and a half in a walk-in doctors seating area for my 10 minutes with the white coated doctors who wear the stethoscope like a tie. I hope that when I become a doctor that I will start by listening to the patients, I mean really listening, and diagnose the whole problem. Now, if you go to your family doctor, only one issue can be addressed at a time, which is an absurd system, because many disease have multiple, complicated symptoms, and how could a doctor possibly fully comprehend which specialist to send you to if he only discusses one of your complaints, briefly? It is absurd!

It is disgusting how the medical establishment is repeatedly failing me in all areas. How could a previously healthy 15-year-old female slip through the cracks without even a backwards glace from the attending physician? Even when that patient was patiently fighting for her life, I still had to fight for their time and ear. I only wish I could get appointments with all the physicians who tried to pass me off to another useless doctor, and explain to them the truth, to shake them with its devastating power. To kindly describe to them in a condescending tone that I have learned by example so well, that there is an epidemic going on, which for some reason hasn’t passed through their gated walls and foot thick glass of the ivory tower where they reside, somewhere high up in the clouds, where the goings on of a creature as small as a tick are insignificant. And anyways, very few ticks apply for passports, so they can’t be coming into the country!?

To surgically open their eyes seems the next logical step.

OH Blahblahblah

Amy and I went to Chapters and Starbucks the other day. It was so much fun! We had lattes together and then hit the shelves running (no, really, shes a good driver!). We were good little girls too and didn’t buy any books. It rained like crazy on the way there, like I’m talking wipers-on-full-blast-and-still-cant-see-shit-and-cant-hear-the-person-in-the-drivers-seat loud and wet. Just ridiculous.

Yesterday, we came back from ‘up’ Ontario, in some small town. We drove like 4 or 5 hours (each way may I add) and stayed overnight in the only hotel in the village. We were there to take in the scenery and recharge. (HA! OMG I know you almost believed me!!). Actually I was lying and we were there to see a doctor (I know…just shaking it up a bit! Life gets so predictable sometimes!). He was nice and minimally poked and prodded, which instantly makes him a good doctor! We went to a ‘Crabby Joe’s’ for dinner (for you West Coaster, its like a White Spot) and someone my aunt and mom when to school with (grade 7 thought 12) was there with her husband, and they hadn’t seen her in like forever, so they joined our table and had dinner together. They were really nice, Nancy and Bret, and super friendly and all. 
I am super tired. Today Amy and I went to Stitches at the mall and I bought pants which is tres exciting because I have 2 pairs of pants to my name and I wear them ALL THE TIME so they can never get washed (well not actually. I do wash them. Only I don’t like to really because then I can’t wear them. Its a big dilemma really). We went in a whole bunch of other shoppes (oh the British spellings make me laugh) and had fun! My joints hurt so much today, especially my knees, elbows and fingers, so typing this really hurts. I also feel super nauseous, which for all my pain handling strength, I have zero tolerance for nausea. Alas! I guess I haven’t been nauseous long enough haha
It was so sunny today. And it still is light out even at 7:30. I’d like to go outside, but I can see this HUGE swarm of icky bugs outside and I don’t like bugs. Eww bugs. 
%d bloggers like this: